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Some Thoughts on the Current State of CCSVI

Posted Jun 13 2010 8:03pm 1 Comment
Central nervous system

Image via Wikipedia

Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning.

Sir Winston Churchill, November 1942

It's now been almost 13 months since I first posted information on CCSVI, in a piece titled "Is MS Actually a Vascular Disease?" ( click here ). At that time, CCSVI was hardly a blip on the MS radar screen, knowledge of it confined mostly to a few dozen patients fervently researching and discussing Dr. Zamboni's findings on the patient forums at ThisisMS.com. A small handful of MS patients had been treated by Dr. Michael Dake, at Stanford University, having stents placed in the narrowings (stenosis) found in the veins associated with their central nervous systems.

Well, what a difference a year has made. CCSVI has created a firestorm in the MS community, as desperate patients have embraced the theory as their best hope to beat back the terrifying beast we call Multiple Sclerosis. Canadian television has aired numerous news pieces detailing the theory and the "liberation procedure" used to treat it ( click here ), hundreds of patients have been treated for the condition at locations scattered around the world, and the Internet is full of seemingly miraculous before and after videos portraying patients whose MS symptoms have dramatically declined after undergoing endovascular procedures to address their vascular abnormalities ( click here ). Just this past Thursday, the US and Canadian MS societies announced $2.4 million in grants to fund seven trials designed to test the validity of the CCSVI theory ( click here ).

Still, there is widespread disgruntlement among the MS patient population, many of whom are dismayed at the almost complete lack of treatment options available locally in the US and Canada, feel that research is moving much too slowly, and in fact believe that a conspiratorial cabal of pharmaceutical companies, mainstream neurologists, and MS societies is intent on suppressing and killing the CCSVI theory in order to protect huge profits and rapaciously defended spheres of influence.

I understand the desperation and anger these patients feel, which speaks loudly not only of the promise of CCSVI, but also of the failure of mainstream neurology to come up with any options better than simply suppressing or modifying our immune systems, often with drugs that carry with them the possibility of terrifying side effects. We are told that our immune systems have somehow gone bonkers and decided to attack our own tissues, but we've never been told why, and with the tremendous profits being generated by drugs companies marketing drugs targeted at the immune system, that why has been left to dangle in the air, twisting in the breeze. CCSVI appears to answer that vital why, in a fairly elegant and easy to understand manner, and thus has been embraced by a patient population frantic for answers.

It's important, though, to take a step back and calmly assess the situation as it now stands. We must guard against hope eclipsing reason, which is difficult to do when, as MS patients are fond of saying, time equals brain. With the omnipresent escort of progressing disability haunting us, we all want solutions, and we want them as quickly as possible.

Still, it's important to discern the realities of where the state of CCSVI research now stands. Many patients insist that the theory has been proven, and that a simple and minimally invasive procedure can halt or reverse the ravages of their illness. It's quite possible that they are correct about the procedure, but the fact is, as has been stated by Dr. Zamboni ( click here ) and some of the other leading CCSVI researchers and physicians themselves (click here and here ), that research is desperately needed to prove or disprove the association between MS and CCSVI, that the procedures used to treat the venous abnormalities that have come to be called CCSVI need to be refined and perfected, and that new medical devices (stents) must be developed specifically for use within the CNS venous system.

Thus far, the only peer-reviewed research that has been published regarding the association between CCSVI and MS comes from Dr. Zamboni, and from the research team at the Buffalo Neuroimaging Analysis Center (BNAC), whose initial trial results involving 500 patients were released in April. All other reports are strictly anecdotal, and as such have little credence in the strict eyes of science. It's vital for completely independent researchers to confirm the initial groundbreaking work done by Dr. Zamboni, to firmly establish that CCSVI is significantly more prevalent in MS patients than in the general population, and, once confirmed, that CCSVI is a cause rather than an effect of the disease. Despite many patients’ belief otherwise, neither of these two propositions has yet been established in any scientifically valid manner. Only once CCSVI is determined to be a causative factor of MS will the MS societies fund studies on treatment.

In the meantime, privately funded studies looking at treatment options have already been proposed, and some should be getting underway sometime this summer.

The studies recently funded by the US and Canadian MS societies are targeted at precisely the two primary goals of proving the CCSVI/MS connection and showing that CCSVI is a cause rather than effect of the disease. Much has been made of the fact that $2.4 million is hardly an overwhelming amount of money to be spent on CCSVI research, especially when placed in the context of the tens of millions of dollars being spent researching other aspects of MS, but at least it's a start. Without the groundswell of patient activism and advocacy, there most assuredly would have been no funding given to CCSVI research whatsoever, and I urge patients to continue to agitate for more, and more timely, research to be done.

The genie of patient activism is out of the bottle, and wielded wisely, can exert great influence on the powers that be. We must be careful, though, to guard against hysteria and extremism, to keep the CCSVI movement from being branded a "lunatic fringe". Discretion is often the better part of valor, and the movement would do well to heed Teddy Roosevelt's advice to walk softly and carry a big stick. That big stick is money, as the MS societies rely heavily on donations from the population at large (contrary to popular belief, only 5% of their contributions come from the pharmaceutical companies). I would expect that a smart and well-organized campaign that impacted the societies’ bottom line would quickly get their attention. Efforts can be made, too, to get CCSVI sympathetic members placed on the boards of the societies, as was recently tried unsuccessfully in Canada ( click here ). There will soon be CCSVI specific nonprofit organizations moving to the forefront, and support for these organizations should rank high on the list of those patients seeking to further the cause of CCSVI.

Switching to the question of diagnosis and treatment, I'm getting more and more concerned about people flying all over the world to get treatment that is quite possibly temporary (angioplasty) or carries with it unknown but very possibly real and troublesome risks (stents). Again, I completely understand the desperation of those willing to spend tens of thousands of dollars, and travel thousands of miles, to get treatment. I myself was lucky enough to get treatment locally, although my liberation procedure was unsuccessful ( click here ). But as the pool of treated patients grows, some obvious trends are emerging.

Even when initially successful, patients treated with balloon angioplasty are too often experiencing restenosis within weeks or months of the initial procedure. This means that they must either spend more time and money traveling across continents to be treated once again, or swallow their losses. Patients treated with stents are also experiencing problems with restenosis and clotting, and the very use of the currently available stents (which were designed primarily for use in arteries located within the chest cavity, which dramatically differ in their anatomy from the vessels of the CNS venous system), presents a host of potentially dire unknowns.

Dr. Zamboni has repeatedly stated that he's very wary of stents being used in the jugular or azygos veins, and when the doctor who treated me presented my difficult case to Dr. Zamboni, Zamboni recommended traditional open neck surgery (as in, slicing and dicing) rather than stenting. Many patients have been stented for CCSVI successfully, but once those stents go in, they're in there for life, and nobody knows what affect the stresses of bending, stretching, and torque that the stents will experience in the neck will have as time passes. Stents specifically designed for use in the veins associated with the CNS are a must if CCSVI does indeed prove to be as important a theory as is our collective hope.

Patients considering the liberation procedure must also keep in mind that not all patients treated see benefit, and some have even reported getting worse after treatment. We've all seen the miracle videos on the Internet, but people on whom the treatment had no or negative impact generally don't make videos for YouTube or show up on the various patient forums. Therefore, what we see and read on the Internet is extremely skewed towards the positive. Between patients who have contacted me through this blog and others that I know personally, I'm aware of quite a few people who have received absolutely no benefit from the procedure. Of course, given the heterogeneous nature of MS (the disease is very different in different patients), this shouldn't come as a surprise, but patients need to be keenly aware that the liberation procedure is not always the panacea that its most fervent advocates often assert it to be.

In short, what we don't know still vastly outweighs what we do know about CCSVI and its role in MS. I personally believe that CCSVI will prove to be a major piece of the MS puzzle. I don't believe that it will be THE answer for all MS sufferers. The promise of CCSVI is tremendous, and in conjunction with advances being made in stem cell therapies, a new age in the understanding and treatment of MS could very well be dawning. But as tedious and frustrating as it might be, we must let the course of science wind its way towards definitive answers. Those who feel they cannot wait, and choose to be pioneers in the treatment of CCSVI, would do well to remember the experiences of the pioneers who settled the American West. Some made it to California, struck gold, and became rich beyond their wildest dreams. Others, like the Donner Party ( click here ), became hopelessly stranded en route, and suffered disastrous consequences.

Due to the nature and speed of my disease progression, I decided to follow the trail blazed by the first and bravest pioneers, and undergo the liberation procedure, although I made it clear that I would only agree to a balloon procedure, and would not consider the use of stents (my doctor was in agreement). I may revisit that decision as my disease marches onward. Each patient must decide for themselves their tolerance for risk, but hopefully, as the saga of CCSVI continues to unfold, those risks will be considerably diminished. At the very least, the issue of CCSVI has pushed researchers to look beyond the autoimmune theory, and that alone is a very good thing.

Comments (1)
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I think that you are not as informed as you believe yourself to be on the matter of CCSVI. It's true that there are many shysters on the web looking to take advantage of MSers willing to travel and pay to get the angioplasty. However, this is true of EVERYTHING offered/available on zillions of sites. Having been to Poland and undergone the treatment, I assure you - Dr. Simka et al are serious professionals. Some less ethical may promise miracles and use the wrong 'tecnology' - they don't. At the end of April they ballooned the blockages in each of my jugulars ( 3 other neuros had told me there were NO occlusions ). I have the CDs of my veins both before and after and they speak for themselves.

In Katowice NO ONE has been either damaged or scr___d.  At the worst, no  occlusions were to be found (VERY rarely) and so the trip came to nought.    

I just felt I needed to set you a little straighter on what has been my (and of course only MY) experience and opinion. 

Tell me, have you or have you not been "liberated"?  It's  not clear.        lori 

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